When Disabilities Meet Codfish

by Javier Robles

Columbus and his mangy crew may have brought bacalao (salted codfish) to the New World but Carmen Robles perfected it in her bacalao y berenjena (codfish & eggplant) dish. This dish does not take long to prepare and is delicious. Give it a try!

Berenjena y Bacalao

Ingredients

2 pounds dried salted codfish (bacalao)
2 medium berenjena (eggplants)
3 large cloves of garlic or one tablespoon pure garlic powder
Manteca de achiote or 1½ packs of Sazon con achiote
Half can tomato sauce
One medium onion
Dash of pepper

One baking dish
One heavy duty large pan

Cut eggplant lengthwise and bake face down with a small bit of water at 350 degrees for about half hour or until tender. Peel eggplant and remove as many seeds as possible then cut into bite size pieces. Place to side.

Boil codfish 2 times to get rid of most of the salt. The first time, drop in codfish after water boils for 10 minutes. Then boil it again with fresh water for 20-25 minutes. This should remove most of the salt.

Break up codfish into small bite-size pieces and place in bowl with eggplant.

In hot pan place 2 tablespoons of manteca de achiote or, if this is not available, coat bottom of pan with olive oil and add a pack and a half Sazon Goya with achiote. Then add crushed garlic and chopped onion; cook until onion is translucent. Stir in eggplant and codfish and tomato sauce; mix well. Cook for about 10-15 minutes and serve with white rice.

In Latino cultures especially Puerto Rican we sometimes talk about being enbacalao. We are having a bad day or bad luck. Things just aren’t smelling right. That’s what I am blogging about this time; a bad mojo between people with disabilities and those who temporarily don’t have a disability. Let’s break down another barrier in hopes of creating a better world to live in.

You ever get the feeling that people are uncomfortable around you? That what you do and say makes them feel uneasy and sometimes embarrassed? We have all been there at one time or another — whether crossing that racial divide or meeting someone new. So how do you feel if you think you’re making people uncomfortable a great deal of the time?

I know I make my mother Carmen uncomfortable when I drive and she is my passenger. Here is a little glimpse into my drive with Carmen.

I wheel into my lift and push the buttons on it “up and in.” Once in the van I roll my wheelchair right in front of the steering wheel. My chair auto locks to the floor and I work the digital control pad to start and shift.

No sooner do I start my car than I hear Carmen, “Padre nuestro que estas en los cielos …” This praying goes on for a good 10 minutes at which point I begin to think: She does not seem too comfortable. She never gets very comfortable.

During Turnpike drives she likes to gently tap me. Why? “Just wanted to make sure you weren’t sleeping.” Holy crap! Why the heck would I be sleeping and driving?

If I listen to NPR she says, “Que es esa porqueria? Don’t you have Spanish stations?”

Honestly, no matter what you hear my driving is not that bad.

I know I make some people uncomfortable. More importantly I have come to believe that a little discomfort by someone else does not bother me a bit. In fact, it can be used as a “learning tool” for the “socially challenged.”

Why do I think I make people uncomfortable? you ask.

For readers of this blog who don’t know me, my presence can be a bit daunting at first. I am a hefty Puerto Rican in a motorized wheelchair and most of the time I travel with my service dog, Janus (to learn more about service dogs go to www.cci.org).

Needless to say many people who see me for the first time think one of a few things such as:

God this guy is so courageous.
Mira Juan, this guy in a wheelchair has a full-time job and you can’t even get a bagging job at Twin City.
Believe and you will walk again!
Holy crap shouldn’t this guy be home in a hospital bed?

People with disabilities are either heroes, non-believers, or sickly. It is our job to make categories and neat boxes we can fit groups of people into. In some cases these categories are developed by long-standing cultural beliefs and traditions, many which are alive and well in many of our countries.

I am here to crush your neat boxes and to kick your misconceptions right were it hurts. I want to rip traditions which claim that it is better to pity the cripple than empower the citizen with a disability. Traditions which thrive on a caste system of social inequality so damaging to the psyche, that many cannot bear the burden they have become. I am not only talking of Latinos but also of the “mainstream,” which profess ideological superiority on issues of equality, but fall short in practice.

Are you thinking Javier is being a little harsh? What’s he complaining about? He has handicapped parking.

I supposed it is a frustration that develops from the day one acquires a disability. It slowly builds and builds and builds then one day you either scream out the window or write this blog. There is a serious need to reevaluate the significance and value of people with disabilities. Not how they make us feel when they miraculously walk out of their wheelchair but how they make us feel when we know they will always be in a wheelchair. I am not discouraging hope, prayer or a belief in a higher power. What I am saying is that the first steps to improving our relationship with people with disabilities are acceptance and power sharing.

Acceptance of the person’s disability seems simple but it carries implications that challenge our traditional misconceptions. The ones no one knows about. The fear to approach someone with a disability, to talk with them and to offer friendship. Worse still, the fact that I am one car accident away from having a disability. Acceptance comes only when one forgets everything you never knew you learned.

So what about power-sharing? My hermanos y hermanas, we in the Latino/a community are only beginning to understand the importance of having a stake in this country’s future. Across the board it is our responsibility to offer every member of the community a portion of our progress. In reality, for people with disabilities it starts with access and ends with jobs. There is too little of either to go around. Moreover, when people such as myself do have access and jobs, we must contend with discrimination from all sectors top to bottom. Do not be fooled — success still has a price. While women have managed to some extent to break through the “glass ceiling,” people with disabilities who are working are buried under a “concrete ramp” pointed straight down. Insuring that Latinos with disabilities are part of our economic and political fabric strengthens us. It allows for growth and power-sharing.

Many of us understand what it’s like to feel like outsiders right within our own communities. That’s what it’s like every day for people with disabilities in this country. To be overlooked and undervalued causes a strong feeling of worthlessness. I — like many other people with disabilities — refuse to be put in a box and labeled for the convenience of others. Family members and friends of people with disabilities are the first line of education about the abilities and contributions that people with disabilities have and will continue to make.

In order to be inclusive we must re-examine ourselves and organizations as they relate to disability inclusion. Many of our leaders feel that it’s okay not to have a ramp, accessible bathrooms, or an inclusive attitude. However, empowerment and power-sharing begin at the basest level and sometimes that means getting people with disabilities into your front door. People with disabilities should not just be viewed as consumers or clients; they should be on their boards and making decisions.

No one wants to be enbacalao. Therefore, treat everyone as you would want to be treated

All We Are

Living It Up

A while ago I saw Milery Cyrus (aka Hanna Montana) being interviewed on Good Morning America about a photo shoot she had done which was appearing in some fashion magazine. To her credit she talked about the two hours of makeup preparation prior to the shoot and the airbrushing that was done to the photos afterwards before they were ready for the magazine. She concluded by saying this process would make any individual look beautiful and sexy. This was quite a mature, candid and astute observation for such a young woman. During my 34 years of teaching I was constantly trying to help students see themselves in a more positive light. When we are subjected to negative interactions in our daily lives we tend to wonder what is the matter with us. When in reality, we should be thinking what’s wrong with the other person. We are bombarded daily with messages of what the ideal image and lifestyle for us should be. Few, if any of us, can live up to these unrealistic expectations. The majority of people seem to be less than satisfied with their physical features. This is very evident when we look at the rise in cosmetic surgery over the past few years. As Oden Black pointed out in his last blog Love You. Love Me! “We look in the mirror and see deficiencies, which are compounded by everyday negative comments and messages we receive from those around us.” Our society worships youth and perfection. How many times have you turned on the television or opened a magazine to see a celebrity who has had so much plastic surgery they are hardly recognizable. There is an additional obsession for many people to look young and in shape, and many individuals take the shortest and quickest methods available to achieve this goal such as liposuction or dangerous fad diets. If I paraphrase Buddhism’s Four Noble Truths we can begin to see a way to relieve some of this way of thinking.

Suffering is due to desire                                                                                                         

Trying to eliminating desire                                                                                                      

Will lead to a life with less suffering

Several years ago I was seeing a psychiatrist who asked me if I could identify any positive things that had come as a result of my condition. After several minutes of thought, I said I had met some wonderful people, but could think of no others. He then suggested to me that I no longer had to worry about vanity. What a ridiculous statement! If anything I’m more vain. In fairness to him, like most of the doctors I deal with, he had little experience with someone with my disability. The point I’m getting at here is that most people in society have hang ups about the way they look and the way others perceive them. So, as individuals with disabilities we are not as different from others as we may think we are. We would all be much more content and enjoy our lives much more if we accepted our physical selves the way we are and allow nature and the aging process to follow their normal courses.

As Matt Nathanson has written in his song “All We Are”

I kept falling over
I kept looking backward
I went broke believing
That the simple should be hard

‘Cause all we are we are
All we are we are
And every day is a start of something beautiful, something real

All we are we are
All we are we are
And every day is a start of something beautiful, beautiful

Getting It Right

About five months ago I was asked to blog on a website in Australia. So, I downloaded a clock onto my home page which would tell me the time there and another gadget to let me see what the daily weather was like. At times I publish blogs I’ve used on my own site with minor adjustments. I thought it would be very interesting to write on the blog in another country but I realized there might be some different perspectives once in a while.  There have not been any until my last blog entitled Patience and Persistence which reflected my harvesting a wild turkey the first since my disabling accident 11 years ago. Imagine my surprise when my latest post was introduced by the following two paragraphs written by the blog editor:

 Hi everyone, welcoming you to another blog from Rich Fabend. Just a side note we in no way encourage the use of guns or promote hunting or anything of the sort. In Australia there are tight rules and restrictions and definite no-nos about the use of guns. I in fact love turkeys as I think they are very fascinating creatures.  However I think that there is a great lesson and moral behind the words that Rich  has presented in his blog posts here, and that is about patience and adapting to change.
 … He lives in America and it is currently Hunting season there, thus causing the theme of his posts. But from his posts we can see that disability is a daily thing, however if we learn to live with it in our own way, it moves away from something hat runs our life to something that is part of our being.

When I first started writing about hunting I fully expected I would get responses from individuals who were uncomfortable with those actions.  I also thought any issues would originate in the US and I believed these blogs would be well accepted in Australia. I have absolutely no problem with the comments that were written. Personally, I believe the United States should have stricter gun laws. However, the more I thought about it the more I realized my own misperception of Australia had been formed from watching  movies like Crocodile Dundee, Australia, Quigley Down Under and the television exploits of Steve Irwin the Crocodile Hunter. Obviously, my concepts were inaccurate. I guess that’s the equivalent of people believing that New York State is one huge megalopolis resembling New York City.

While our views of other countries and cultures may be very limited, one thing is perfectly clear to me and that is that, as individuals with disabilities, we are a subculture of our own regardless of where we live in this world. We are brothers and sisters united by our struggle to deal with the profound challenges that confront us every day. I believe, in many ways, we have more in common with each other than we have with many of our able-bodied countrymen. When we communicate there is an unspoken acknowledgment of what our daily lives are like. We immediately understand what each of us is dealing with and feel no great need to explain it.

I orginally started my website www.handihelp.net so we could communicate with each other and more particularly share ideas, shortcuts and equipment that we have developed to reduce the frustrations we face daily. Why should an individual joining our subculture not be able to have ready access to the things that have already been developed which would improve their quality of life? I am speaking here primarily of equipment but I also feel strongly that we should share the mental processes, attitudes and beliefs that have allowed us to adjust to situations that life has chosen to place us in.

So first I should apologize to the people of Australia for the foolish beliefs I had about their country. More importantly, I think we of the world’s disabled community should make greater efforts to share our thoughts and information which will enable us to live more stress-free lives.

Patience and Persistence

I have waited for this moment for a long time. May 26, 2010 – 9:15 AM. Today I harvested my first turkey in 11 years. I had been an avid hunter prior to my disability. I believed I would never be able to hunt again, especially by myself. Today’s success was the result of the labors of many people: my wife, who walked me out and help me set up, my nurse Rhonda, who came at 6 AM the mornings in May so I would have more time to hunt, my neighbor Mike, who allows me to hunt his land, my friend John, who gave me his time to set up blinds made out of snow fence and camouflage material, and so it goes. My wife likes to say “It takes a village”.

The blind

I am also proud of myself. Over the 11 years, I got discouraged; turkeys often were close enough to harvest but something always went wrong.  In the beginning it was my inability to camouflage my wheelchair well enough, then my finger couldn’t pull the trigger, or I had a muscle spasm which alerted the turkeys to my presence and were instantly gone. But I persisted and attempted to correct the challenges as they presented themselves. But at the end of each spring I had the same results — NOTHING. Often it was a process of trial and error, but gradually my efforts began to improve my chances. I created a trigger adapter which allows me to fire the shotgun using my mouth. Not only does this solve the problem of trying to find the trigger, but it also allows me to use both hands to steady the gun. At many points along the way it would’ve been easy to give up and quit. I know from experience it’s a lot easier to give advice to others than it is to take it myself. So get discouraged, get frustrated, but don’t give up.

The trigger adapter I made

One of the things I like the most about hunting is that it is totally irrelevant to the game that I am an individual with a disability. To the turkeys I hunt, I am just another predator and that’s all I ask for. Today was definitely a day worth waiting for.

The turkey on my lap. Notice the turkey call I adapted to sit on my thigh so I could use it one handed